I’ve had many things that I’ve had to fight in my life. I had a tumor that caused me to break my arm 5 times before they operated when I was 15, I was told I had fibromyalgia, chronic fatigue, IBS….I have a wheat allergy, probably celiac-disease, hypothyroidism, I’m bipolar, I’ve been raped, I’ve been divorced, I was in an abusive relationship…..Everything I’ve been though I came out fighting, and I persevered.
Then I got Meniere’s Disease. At first it was really no big deal. I would have an attack every once in a while. Sure I was a little off-balance, but I’ve been a klutz most of my life, and I had constant ear infections growing up, I was used to my ears bothering me. My ENT gave me tubes, and that seemed to work, for a while. (Dr. Kaylie thinks I was really just going through a good time again, and the treatment wasn’t really working. I don’t know. It seemed to work for a couple of years.) Then starting the beginning of last year the Meniere’s went bilateral, and I haven’t been the same. I went from an independent person to a person who has to depend on her husband for nearly everything a lot of the time.
There are 3 major things that make this disease so very hard for me to deal with.
- I’m afraid most of the time. Not just of having an attack, now don’t get me wrong that scares me, a lot. But I’m also afraid that every little happy thing I do, that it may be the last time I get to do it. For example, I’m afraid I’ll never be able to drive again. When I try to do something that makes me dizzy, I think, “I may never be able to do this again.”
- I feel like a burden. I know my husband says I shouldn’t. But I often do. I can’t do a lot. And so many of my friends have just dropped of the face of the earth, I have to feel like they just couldn’t handle it. Their lives are too busy to handle having a disabled friend….it’s just hard.
- I often feel like I don’t have anything to fight. (I have to depend on the doctors for everything. I can’t do anything to try to fight for myself.)
But I’m realizing I’m wrong on most of those accounts. I’m beginning to look at things differently. In part because of some of you, because of my darling husband, and my pretty smart therapist. (who I made cry this week….I really do need to stop making people cry. I’m so happy that people care about me, but I hate making people cry. You know I say that, and I mean it, but then in a small way, it warms my heart that someone cares that much about me.)
Better ways to think of things:
- I do need to have a little bit of healthy fear, so I will recognize when an attack is coming, so I can try to head if off. But I need to treasure the things I do, if I don’t get to do them again, at least I will have these precious times. I also need to remember, that we are working to get this Meniere’s under control, and I may be able to do many things again.
- My husband doesn’t feel like I’m a burden. He is so grateful for that he can be here for me, and it bothers him that he can’t do more. As for my friends. As our lives change, sometimes we lose friends, and we gain other friends. It doesn’t have to be because I’m disabled. It could be for any number of reasons. Perhaps, it’s just this time in our lives that our friendship isn’t working any long.
- My attitude about things can be a good fight in itself. Working to find out as much as I can about my disease, and what can be done. Simply taking my medication when I feel like an attack is coming on is fighting. I need to realize that I am fighting, and I’m constantly finding new ways of fighting back. I will not allow this disease to take away my hope, or my desire to fight.
There may be times that I forget this:
When this happens, I hope that you (my friends) will kick me in the butt and point out what I have said here and get me back on the path I want to follow.
Picnic with Ants 
Wendy- Although I can’t really know what you are going through because I’m not experiencing it myself, I want you to know that:
1) You are right a healthy bit of fear is okay, but if you ever…EVER…need someone to talk to I’m here to listen. For Reals!! I may not have the right answers, but I have ears/eyes to listen/read…and not judge.
2) I think your new prospective on friends is great. Like we talked about friendships are constantly going through revisions. We grow, we evolve, we change. You are not a burden.
3) I think you do a good job of fighting for yourself. Being informed about what’s happening and finding out alternatives. You are an AWESOME advocate! Keep it up Girl!
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Chrissy,
You’ve been a dear friend for years now, and I treasure you. Thank you for your comments. I know you will be there to kick me in the butt if I need it. Ah, you know how I feel. I love you girl!
w
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Dear Wendy!
1. A little fear for things you can handle and deal with is healthy. The great fear of attacks and all things you maybe cannot do with Menières is not healthy at all. There are new things to explore, things you haven´t done yet but maybe will do in the future instead of these things you cannot do for now!!! There will be lots of opportunities!
2. A change in life maybe changes who is your real friend. But a new life can give you new friends you never would have met if life just rolls on as it always has.
3. What about not fighting against and instead make the walk together with the illnesses. Fighting takes a lot of energy. I´m not suggesting you should surrender completely just try to beat the things you really can beat.
I hope you understand my words. Sometimes it´s good to try looking at things from a completely different view. You have come through a lot of bad situations in your life and in the future this will also be one of these things!
Susanna
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Susanna,
I understand your words perfectly. and I think your suggestion on number 3 makes a lot of sense. I’m not giving up, but I am trying to be more excepting.
I appreciate your words very much.
w
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Oh, I’m right there with you on the fear. It comes and goes so much, just like the attacks. I keep praying that maybe it’ll be gone. I’ve had some good days now, but there’s that nagging fear that the other shoe is going to drop and it’ll all come crashing down.
You’re such a fighter and such a strong person. I’m so glad we’ve found each other’s blogs because I absolutely love reading your posts. Your insight and your honesty about this incredibly frustrating disease helps me know I’m not alone.
And you’re not alone, either! Your husband sounds like an amazing source of support and comfort. And hopefully, in addition to the support you find online, you’ll also find in person friendships that will be supportive and understanding.
Love!
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I think it’s great that you’re making the choice on how you react to the various emotions and situations that you’re dealing with. It’s too easy to get caught up in the negativity. We may at times feel like there’s not much we can control and that all we do is react. But, with the change in thinking, you are showing that you are being proactive and working on ways that are best for you.
And, please, if it ever seems like I need a good kick, please do so.
Now, tell us, are you trying to become the next Barbara Walters with the crying?
Maureen
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Maureen,
I have to say, I don’t understand the Barbara Walters thing, and I’m probably glad I don’t. 🙂
But I’m going to try and look it up to see if you are insulting me…humph! hahaha
I’m trying hard to look at things differently. I have been feeling very out of control, and like all I can do is react to things, and usually, that reaction is negative. But I realized I’ve been choosing to react that way, and I can choose to react differently. However, old habits die hard. And I will probably need more butt kicking that I want to admit. : )
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The running joke with Barbara Walters is that when she is doing a one-on-one interview, usually with celebrities, they start talking about something really personal and the celebrity cries. And, usually, the celebrity says something about being asked questions that will make them cry.
On the plus side, it is Barbara Walters, and she is trusted by many people and is one of the trailblazers for women in journalism so you’re in good company.
As for the old habits dying hard, if we changed for the better quickly, what would we have to talk and blog about? lol. I think we put too much pressure on ourselves. We all want to do better at everything all at once. But, like so many other areas in life, taking baby steps is the way to go most times. As long as we keep going forward.
Have a good day.
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I love that about Barbara Walters. (of course when I think of Barbara Walters I still think of the old gag on Saturday Night Live. Baba Wawa…Yes, I am showing my age. But I just loved Gilda Radner! Talk about a trail blazer for women!)
The funny thing is I not only make everyone else cry. I find myself crying at every thing. (I’m determined to get over this.) Good thing, bad things, just anything…I cry. It may just be one tear….but here it comes. It’s funny I try hard not to cry at my therapist. I think it’s because I’m afraid I won’t stop. I think I’m getting better. I don’t think I cried at all yesterday. And one day last week, the only time I cried was when we watched *Despicable Me* again, and that was because I was laughing so hard!!!
I agree whole heartedly about baby steps, but I forget it all the time. I want to dive into every thing feet first and in the deep end! For example, I just started working with a nutritionist and she keeps telling me, we’ll get there, one step at a time. I want to do it all at one time. Then she says, but then how will we know what is working? *sigh* OK…I’ll slow down. At least she understands my desire, I’ve been sick for too long. (I really need for these GI issues to go away!)
(It’s so funny, when I go to write a reply, I plan on writing 2 lines, and end up writing a page. I guess I have so much to say! hahaha) w
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